Caring for a loved one with Alzheimer’s is challenging, especially when incontinence is in the picture. This article discusses how Alzheimer’s affects incontinence and offers practical tips to manage it.
Alzheimer’s disease is a condition that slowly affects a person’s memory, thinking, and behavior. It’s important to know that Alzheimer’s is not a normal part of aging, even though it’s more common in people 65 or older. In fact, about 10% of people with Alzheimer’s were under 65 years old[1], which is quite uncommon for a type of dementia.
As the disease progresses, you’ll notice changes in your loved one’s behavior. They may become disoriented, experience mood swings, have difficulty with language and communication, and struggle with daily activities like using the toilets.
The rate at which Alzheimer’s progresses can vary from person to person. It depends on how severe the symptoms are when diagnosed and the quality of care they receive. Making lifestyle changes and providing quality care can help slow down the progression of the disease. On average, people with Alzheimer’s disease live between three and 11 years[2] after diagnosis, but there are cases where individuals live 20 years or even longer. However, if someone is diagnosed in their 80s or 90s, their life expectancy may be shorter.
Remember, each person’s journey with Alzheimer’s is unique, and providing support, understanding, and appropriate care can make a significant difference in their quality of life.
How is Alzheimer’s Linked With Incontinence
As Alzheimer’s disease progresses, it’s not uncommon for people to experience bladder and bowel incontinence, especially in the middle and late stages. This means they may unintentionally leak urine or have difficulty controlling bowel movements.
Alzheimer’s affects the brain’s ability to process signals from the body, including those related to bladder and bowel control. So, someone with Alzheimer’s may struggle to recognize or respond to the signs that tell them they need to use the restroom.
Sometimes, even at home, they might have trouble remembering the way to the bathroom. Other factors like medications, urinary tract infections, or problems with muscle control can also contribute to their incontinence.
There is a connection between Alzheimer’s disease and incontinence, supported by multiple studies[3] as well as research that incontinence is more common in individuals with Alzheimer’s compared to those with normal cognitive function. However, it’s important to remember that incontinence shouldn’t be accepted or considered normal for people with Alzheimer’s. Each situation is unique, and it’s crucial to identify the possible causes to determine the appropriate level of care for your loved one.
Types of Incontinence
As you likely already know, incontinence means losing control of the bladder or bowels, which can lead to accidental leakage of body fluids and waste. But it’s not just a physical issue – it can affect someone’s quality of life and emotional well-being if not managed properly.
Your loved one may experience either urinary or fecal incontinence. Sometimes both incontinence together if your loved one has severe cases of pelvic floor dysfunction. Also known as double incontinence, the condition is not uncommon, especially in older individuals.
When it comes to bladder or urinary incontinence, there can be different reasons behind it. It could be weak or overly active bladder muscles, urinary tract infections, hormonal changes, certain medications, or neurological conditions. Stress incontinence is common for women when pressure on the bladder increases during activities like coughing, sneezing, or laughing, causing leaks. On the other hand, urge incontinence is when there’s a sudden and strong urge to urinate, sometimes leading to leakage before reaching the bathroom.
Mixed incontinence is when a person experiences both stress and urge incontinence. In addition to frequent urges to use the restroom due to an overactive bladder, they may leak urine during physical activities or when coughing or sneezing (stress incontinence). Mixed incontinence can be caused by pregnancy, childbirth, or damage to the nervous system from conditions like stroke or Parkinson’s disease.
Sometimes, the causes of both forms of incontinence may or may not be related. Seeing a doctor for a proper diagnosis and treatment plan is crucial.
Bowel incontinence, on the other hand, is when a person has trouble controlling bowel movements. It can be caused by weakened sphincter muscles, nerve damage, inflammatory bowel disease, chronic diarrhea, or constipation. Dealing with bowel incontinence can be hard because it can be embarrassing, lower confidence, and make social interactions difficult.
Managing bladder and bowel incontinence requires understanding the underlying causes and seeking appropriate medical guidance. With proper treatment, individuals can regain control and improve their quality of life.
How incontinence affects a person with AD
Living with bladder and bowel incontinence can be problematic for anyone. Now, imagine how much more challenging it can be for someone with Alzheimer’s.
Alzheimer’s can cause changes in behavior and personality. This means your loved one might become more agitated, confused, or disoriented, making it harder for them to handle their incontinence. On top of that, the cognitive decline associated with Alzheimer’s can make it difficult for them to express their needs or recognize when they need to use the bathroom.
Sometimes, they might forget to let you know they need to go. If they already use incontinence products to stay dry, they might forget to change them before leakage occurs.
As the disease enters the later stages, it can affect mobility[4]. They may gradually lose their ability to walk, stand, or get up from the chair or bed. They may also be more likely to fall.
Dealing with incontinence can make them feel embarrassed and anxious and lower their self-esteem. It is especially so for those with early onset who are more aware of their situation and may function independently; they may still drive, work and participate in social activities. They worry about smells, leaks, and accidents, affecting their social life and overall well-being. It’s normal for them to avoid going out to prevent accidents from happening.
To make things harder, people with Alzheimer’s can easily become depressed[5]. Needing help with toileting, wearing incontinence products, or dealing with accidents can be emotionally distressing for someone with Alzheimer’s. That’s why they might keep quiet about their needs until too late. Once there is soiling or if the absorbent product is wet, clean it and change it as soon as possible to prevent skin irritation, rashes, and even pressure ulcers. These infections only make their irritability and anger worse.
In this uncomfortable situation, it’s crucial to be understanding and supportive. Showing empathy, offering reassurance, and creating an agreeable environment can make a big difference in helping your loved one cope with these difficulties and maintain their dignity.
Tips for Managing Incontinence in a Loved One with Alzheimer’s Disease
Caring for a loved one with Alzheimer’s disease and incontinence can be incredibly demanding and emotionally taxing. First and foremost, witnessing a loved one’s gradual decline due to Alzheimer’s can be heart-wrenching – increased dependency, memory loss, confusion, and changes in their personality.
As emotional and discouraging as it is, there are still the usual physical demands of the day that you must get through with your loved one. All these require immense patience and effort, but there are things you can do to help manage their incontinence.
- Create a routine for toileting, including frequent bathroom breaks and scheduled times for voiding. Stick to the routine as much as possible as it can help reduce accidents and maintain a sense of predictability.
- Keep track of their fluid intake throughout the day to predict when they may need to use the bathroom, and gently encourage them to do so.
- Look for signs or cues that indicate they need to go, like restlessness or grabbing clothes. Guide them to the bathroom or assist as needed.
- Make it easy for them to locate the bathroom. Keep the door open so they can see the toilet, add a picture of a toilet to the bathroom door, anything that will serve as a cue to them to help them find the bathroom.
- Create a safe environment for them to use the bathroom, such as with grab bars, non-slip mats, and clear pathways. If your loved one is not mobile, consider using commode chairs or bedside commodes. These are portable toilets placed near their bed or in a private area, offering easier access when needed.
- Provide gentle reminders and cues about using the bathroom, even if they resist following a schedule. Use simple language and visual cues to encourage cooperation.
- Use adaptive products, such as incontinence pads or briefs, to manage accidents and foster comfort and dignity. Set a routine to check and change them regularly to prevent odors, foreseeable hygiene issues, and skin problems. If your loved one is more independent, offer reminders to use the bathrooms to check and change if wet.
- Protect the bed. If bedwetting becomes an issue, use protective bedding to prevent stains and help with cleanup.
- Talk to their doctor. Discuss the challenges with your loved one’s healthcare provider to address any underlying medical issues and receive further guidance tailored to their needs.
- Be understanding. When discussing incontinence with your loved one, it’s important to approach the conversation with compassion and respect. Be mindful of their dignity and privacy, and choose your words carefully. It’s a sensitive topic, but open communication can help you understand their needs better.
Remember to approach the situation with patience and compassion, adapting strategies according to the need or situation to ensure their comfort and well-being.
Additional Considerations for Caregivers
When caring for a loved one with Alzheimer’s and incontinence, your well-being must also be considered. As a caregiver, you play a central role in their care, closely monitoring their symptoms and overall health. But sometimes, you may forget your needs when caring for your loved one.
Taking care of yourself is a must. Remember to take breaks and find ways to recharge. Whether it’s a few hours or a whole day of respite care, make time for activities that bring you joy and help you relax. If you’re feeling emotionally drained, talking to a therapist or joining a support group can make a big difference. By prioritizing your self-care, you’ll be better equipped and have the energy to keep up with the demands of your role while staying informed about the disease and how it progresses.
Conclusion
Alzheimer’s disease is a slow and gradual medical condition that affects memory, thinking, and behavior. While it is linked to aging, it can also affect people younger than 65. As the disease progresses, they might start experiencing changes in their behavior, losing mobility, and physiological changes, including bladder and bowel incontinence.
Managing incontinence in a loved one with Alzheimer’s requires immense understanding and empathy. There are, however, tips to help better manage the condition. It’s essential to establish routines for toileting, track their fluid intake, and provide gentle reminders and assistance when needed. Creating a safe and accessible environment, using adaptive products, and discussing challenges with healthcare providers are all crucial steps in helping your loved one manage incontinence effectively.
As a caregiver, you also need to prioritize your well-being. Taking breaks, seeking support from therapists or support groups, and staying informed about the disease can help you stay healthy while providing quality care to your loved ones. Considering legal and financial aspects, such as power of attorney and accessing specialized support, can also be beneficial.
Everyone’s journey with Alzheimer’s is unique. Hence offering support, understanding, and the right care can make a real difference in their quality of life. With empathy and compassion, you, as the caregiver, can tackle the challenges of Alzheimer’s and incontinence head-on while nurturing comfort, dignity, and health for your loved ones.
Sources
- https://www.health.harvard.edu/blog/im-too-young-to-have-alzheimers-disease-or-dementia-right-202206202764
- https://www.mayoclinic.org/diseases-conditions/alzheimers-disease/in-depth/alzheimers-stages/art-20048448
- Bartolone SN, Sharma P, Chancellor MB, Lamb LE. Urinary Incontinence and Alzheimer’s Disease: Insights From Patients and Preclinical Models. Front Aging Neurosci. 2021 Dec 17;13:777819. doi: 10.3389/fnagi.2021.777819. PMID: 34975457; PMCID: PMC8718555. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8718555/
- https://www.alzheimers.org.uk/about-dementia/symptoms-and-diagnosis/how-dementia-progresses/later-stages-dementia#content-start
- Kitching D. Depression in dementia. Aust Prescr. 2015 Dec;38(6):209-2011. doi: 10.18773/austprescr.2015.071. Epub 2015 Dec 1. PMID: 26843714; PMCID: PMC4674029. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4674029/
2 Responses
I am new to this website to get more information on dealing with my own incontinence problems… but if it is allowed to reply to Janet’s comment I’d like to offer my sincere sympathy for her situation in helping her mother through these complex difficulties. I had the care of my mother with multiple problems including the incontinence issue and it does make everything even harder to manage.
I don’t know if any of the meds could lead to AD… I certainly hope not. I am still trying to get more accurate info on the best current advice on handling types of incontinence and I have seen comments on limiting fluid intake depending on the root cause of the problem…but I believe it was coupled with tracking the fluid output to guard against dehydration. Incontinence is a complex problem. So good wishes to everyone.
My mother was diagnosed with AD years after she had already been taking meds to control incontinence. The meds probably sped up the progression of dementia. The tips listed in this article were not effective for her, they did not help her manage her incontinence – and not drinking enough water is a sure way to be dehydrated. There really has not been enough attention given to this topic by researchers. I assure you that if more men had neurogenic incontinence researchers would be eager to understand it!